Patients living with Parkinson’s disease share what they wish they’d known when they were diagnosed.
Every year in the United States, about 60,000 people learn they have Parkinson’s disease, according to theAmerican Parkinson Disease Association. The degenerative disorder strikes the central nervous system, impairing movement and balance, among other issues.
If you or a loved one has been recently diagnosed, these 10 things that patients who’ve been living with Parkinson’s for several years wish they’d known at diagnosis — which their doctors didn’t tell them — may make managing the disease easier.
1. Side effects from Parkinson’s drugs can be as bad as the symptoms. In Parkinson’s, the brain chemical dopamine dwindles, affecting movement. While a carbidopa-levodopa combination drug like Sinemet or Rytary is the primary treatment to replenish dopamine and improve the rigidity and tremors that mark Parkinson’s disease, many patients take a variety of drugs to treat all symptoms that may occur. Be sure to ask about possible side effects each time a new medicine is prescribed.
“The side effects of medications can be just as bad as the symptoms,” says Marilyn Garateix, 50, executive director of a nonprofit organization and a freelance journalist in Miami, who was diagnosed at age 42. At one point, Garateix says, she had trouble sleeping due to ”crazy insomnia.”
Because she was on more than one drug, Garateix says, it was difficult to pinpoint which one was the culprit. So she asked her doctor to adjust her medications as she also learned better sleep habits, which improved her insomnia.
Besides insomnia, patients on carbidopa and levodopa can have twitching or uncontrolled, repetitive movement of the arms, legs, face, and other body parts. Less common are pain, urinary problems, or lack of appetite.
Another potential side effect tied to dopamine agonist drugs, such as Requip (roponirole) and Mirapex (pramipexole), is obsessive-compulsive behavior, which could include gambling, hypersexual behavior, or excessive spending. Patients say it’s important to be warned of this.
2. Figuring out the best treatment can take some time. While the levodopa-carbidopa combination is the most commonly prescribed medicine, many other drugs that work in different ways are also options for Parkinson’s disease treatment, according to the Cleveland Clinic.
“Figuring out the best treatment can take a while,” says Terri Reinhart, 58, a retired kindergarten teacher near Denver who shares her Parkinson’s journey on her blog. She was diagnosed in 2007, and for her, ”the first five years were kind of rocky.” She had breathing problems on one medication, she says, and severe insomnia lasting two weeks on another.
But she and her doctors finally found a combination that worked for her. Things have smoothed out, and patience helped: She learned that finding the right combination often takes time. “It’s good to understand that’s the process,” she says, adding that she wishes she’d had more counseling about how the drugs work.
3. Not all neurologists are specialists in Parkinson’s disease. Neurologists are the doctors who often treat those with Parkinson’s disease, but ”not every neurologist is a Parkinson’s specialist,” says Bev Ribaudo, 56, a retiree in Yuma, Arizona, who was diagnosed at age 47 and now blogs about her condition atParkinson’s Humor. She suggests considering a neurologist with a specialty in movement disorders.
A movement disorders specialist, according to The Michael J. Fox Foundation for Parkinson’s Research, ”is a neurologist who has received additional training in Parkinson’s disease and other movement disorders, including dystonia, chorea, tics, and tremors.” Because these specialists focus on patients with movement disorders, they are likely to be more familiar with Parkinson’s symptoms and treatments. The foundation has a tool to help patients find a specialist.
4. Exercise is crucial in maintaining quality of life. “A lot of doctors are still not telling patients about exercise,” says Larry Kahn, 55, a retired tax attorney in Atlanta who was diagnosed in late 2010. “I went to three doctors, and none of them told me about vigorous exercise,” he says.
Kahn went to a support group, where members suggested intense exercise to manage his Parkinson’s. It made a huge difference. “I boosted the exercise, and my mental attitude has improved quite a bit,” he says, adding that with medication and exercise, he feels more in control. His routine includes yoga, tai chi, boxing, Zumba, and strength training. In 2014, Kahn founded the PD Gladiators, a nonprofit devoted to combating Parkinson’s disease with vigorous exercise (he serves as the group’s CEO).
Studies back up his exercise claims: A study review published in the Journal of Aging and Physical Activity found that exercising for an hour two to four times a week leads to positive effects on quality of life.
5. Finding the right Parkinson’s support group can be invaluable. Garateix’s doctor suggested she find some support, which she says becomes important. She was just 42 when she was diagnosed, so she says it took some time to find a group that was the right fit and that she could relate to. Many people are diagnosed after age 60, and in one group, their major concern was how to pick up their grandchildren easily, she recalls. She didn’t want to dismiss the concern, but she couldn’t relate.
“Now I’m in a support group with women around my age,” she says. “That makes a world of difference.” They understand her challenges, such as her concerns about career, for instance, while many of the older retired people did not.
Here are details about how to get started if you are seeking a support group.
6. Physical therapy can help with Parkinson’s symptoms. “A lot of doctors reserve physical therapy for patients who already have impairments,” says Kahn, the exercise advocate. But he says a good physical therapist can help design an exercise program and monitor symptoms.
Research on physical therapy and its effect on Parkinson’s symptoms has produced conflicting findings, partly because different researchers study a wide range of physical therapy programs. In a roundup of recent research, experts at the National Parkinson Foundation say they still believe physical therapy has benefits. Some recent studies that found no benefit researched ”low-dose” PT, among other limitations, so it may not have been frequent or intense enough to reap benefits, experts say.
7. Informing family and friends will help in the long run. “I kept it[my diagnosis] from my parents for a year,” says Garateix. “I didn’t want to be a burden on my family.” She also valued her independence. But as she and others learned, having a well-informed circle of family and friends helps them be prepared for future situations when you do need help. “You have to learn how to negotiate your independence,” she says. Her dad always took her luggage to the car, for example, and she wanted to do it herself. So they finally had a heart-to-heart, and she told him, “You have to let me manage and let me figure out what I can and can’t do.” She also learned to pick her battles. Now she sometimes takes her luggage to the car, but says ”most of the time I let him do it.” She also learned that it’s important for family members to feel like they’re helping.
8. Your doctor can fill family and friends in on your condition. “I think doctors need to have a session with the family,” Garateix says. “The doctor can give the family a reality check about what lies ahead.”
For instance, she says if family members know beforehand about the gambling and other obsessive-compulsive issues that can occur as side effects of certain Parkinson’s medicines, they can be alerted to the warning signs.
9. Not all Parkinson’s disease symptoms are neurological. Parkinson’s ”is a lot more than just shaking hands or stiffness,” says Ribaudo. It can affect many body parts. According to The Michael J. Fox Foundation, there can be many non-motor symptoms, including speech and swallowing problems, constipation, and mood and sleep issues.
10. Take ownership of your diagnosis and feel better. ”Take ownership of your situation by learning about Parkinson’s disease and how you can live well with it,” says Kirk Hall, 67, a retiree in Denver who writes the blog Shaky Paws Grampa.
Educating yourself has many benefits. “This will enable you and your care partner to take an active role in the management of your condition,” he says. That includes knowing about symptoms, discussing changes and medications, and always asking your healthcare providers if you have any questions.
Doctors say many people die with Parkinson’s, not from it. But as symptoms worsen, they can cause life-threatening problems. So taking control of the situation is excellent advice, says Betsy Vierck, 70, of Denver, a patient advocate and medical writer who was diagnosed in 2006. “Once you’re diagnosed with Parkinson’s, it’s a lifetime commitment,” to adapting and changing as the need arises, she says. which can have great payoffs.
The disease ”is going to change, so you have to change the way you adapt, what kind of medications you take, and a lot of your social and home environment to adjust to all those changes,” she says. “I had to relearn walking mechanics.”